Lymphangioma circumscriptum in axilla from lymphedema?

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aussieched
aussieched Member Posts: 244
edited January 2018 in Lymphedema

I have been having problems with lumps coming up in my axilla and recurrent cellulitis during the last 2 years.  I have had many biopsies and been to several doctors without finding a diagnosis.  I was fearful that they were skin mets, however I finally got a diagnosis yesterday of lymphangioma circumscriptum.

It appears to be a complication from lymphedema/radiation and having 30 glands taken out from my breast cancer surgery.  The lumps change size and often sting and weep lymph fluid and it appears that the area is growing larger.

I have been advised this condition is very rare, and no successful type of treatment to get rid of it.

Is there anyone else out there who has this condition, who could jump in and give me some further advice on the long term issues with this condition.

thanks Ched

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  • LETherapist
    LETherapist Member Posts: 1
    edited April 2013

    Ched,

    The condition you speak of is a rare condition where lymphatic capillaries close to the skin fill with lymph fluid forming the little papules you mention. You can find detailed information on this disease at this address:

    http://emedicine.medscape.com/article/1086806-overview

    Treatment is likely to be the same as for any lymphatic disorder utilizing Complex Decongestive Therapy (manual lymph drainage, compression wrapping or garment (where possible), exercises and skin care. I would advise that you seek out the help of a Physical or Occupational Therapist certified in the treatment of lymphatic disorders (e.g. lymphedema).

    Although the condition is uncomfortable, according to the article at the forementioned website, the condition is not life-threatening. It mostly occurs in children so interesting that you would acquire this condition in adulthood. However, since you had lymph nodes removed and treatment for cancer, you are at least 30% at risk of developing arm lymphedema and so the appearance of this condition is likely to be related to the same causes for breast cancer related lymphedema.

    Read the article and then find a lymphedema therapist to assist you with controlling this condition.

    Tom Kincheloe, OTRL, CLT, WCC

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  • aussieched
    aussieched Member Posts: 244
    edited April 2013

    Hi Tom,  Thanks so much for taking the effort to respond to my post above, and providing a link with further information.  Your assistance is very much appreciated.

    regards Ched

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  • aussieched
    aussieched Member Posts: 244
    edited May 2013

    Is there no one at all with this condition from all our breastcancer org members.  I was told it was rare, but find it hard to believe I am the only one here batttling with this new side affect of breast cancer treatment.

    thanks Ched

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Aussieched, here is an image of lymphangioma circumscriptum in the scrotum, from New England Journal of Medicine--I shared it with Pat O'Connor who runs lymphadema people and he said that many people described it, but didn't know what it was:

    http://www.nejm.org/doi/full/10.1056/NEJMicm1101005

    I'll bet people have it, just don't know what to call it.

    Here's an article about a woman who was treated with hypertonic saline, from Ohio State

    http://www.ncbi.nlm.nih.gov/pubmed/16112350

    J Am Acad Dermatol. 2005 Sep;53(3):442-4.

    Lymphangioma circumscriptum: treatment with hypertonic saline sclerotherapy.


    Source

    Department of Dermatology, Ohio State University, Columbus, Ohio, USA. drb@bikowskimd.com


    Abstract

    A 38-year-old woman came for treatment of multiple clear vesicles and hemorrhagic papules on the posterior aspect of the right shoulder and the right axillary vault of 5 years' duration. These lesions would spontaneously manifest as clear or blood-filled vesicles (or both) and appear to be exacerbated by physical contact from certain articles of clothing. A biopsy was done and the results revealed lymphangioma circumscriptum. The purpose of this case study was to evaluate a new form of treatment of lymphangioma circumscriptum with the use of 23.4% hypertonic saline sclerotherapy. The patient's lymphangioma circumscriptum significantly resolved with minimal side effects, such as mild hyperpigmentation. Decreased sensitivity was noted and no further treatment was indicated. This case showed that hypertonic saline 23.4% solution can be effective in treating the appearance of vesicles containing clear fluid or lymph and those containing red blood cells in superficial lymphangiomas and that this treatment can be considered for long-term management of lymphangioma circumscriptum.


    Kira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2013

    Aussieched, I agree with Kira--there are no doubt other Sistahs here with this condition, but it has not been diagnosed. Hopefully your post will draw out some of those struggling with this and help make them aware of how to deal with it.

    I'm sorry you have to be such a pioneer!Frown Please keep us posted on how you are and what you discover.

    Gentle hugs,
    Binney

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  • aussieched
    aussieched Member Posts: 244
    edited January 2018

    Well here I am again, have not posted on this subject since 2013, however my condition of lymphangioma circumscriptum continued to spread and become much worse over the last 4 years, until it got to the point 6 months ago, I was ending up in hospital with continual bouts of cellulitis and put on IV antibotics, but to no avail, it would keep returning and I had 4 bouts in 4 months. I finally found a plastic surgeon in Sydney who decided that surgery was necessary to try and control the condition. He ended up taking the whole affected area of skin off from my axilla and cut a flap of skin from an area of the breast and swung the flap around and sewed into place. At this point there are still some lesions remaining outside of the new skin area, so it does appear that my problem has not been totally resolved at this stage. This is basically a way to slow the condition down, but is not a cure.

    I was told this condition is very rare, but a complication of too many nodes being removed from my axilla (30), plus radiation on top of it. I did react very badly to the radiation and had bleeding burns for months after radiation was completed. I have heard of one other lady in Australia who has experienced this same problem, however her lymphangioma circumscriptum turned malignant, so I consider myself lucky at this stage that my pathology came back negative at this stage.



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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2018

    ched, thank you for updating us, only I'm so sorry to hear it's been such a terrible battle. It's always been so difficult to get our doctors to diagnose lymphedema in a timely manner, but with this condition being so rare it must be next to impossible for women struggling with it to get answers. Your posts here really matter, and I'm hoping other women with this issue will get some answers because of your posts.

    I wonder if you've seen an infectious disease specialist. Several of our gals here with repeated cellulitis have gotten real relief by a long-term regimen of low-dose antibiotics. Cellulitis makes the underlying condition of lymphedema worse, and often harder to control, so I'm guessing that controlling the infection rate might make a difference in slowing the progression of the lymphangioma circumscriptum as well.

    Hooray for the very, very good news on the recent pathology--bet you were holding your breath on that one. It's hard when we hear of others whose diagnosis resembles ours, but they take a turn for the worse. I have to keep reminding myself that we each have our own stories, and I'm living my story, not anyone else's.

    I hope we will some day soon see some studies on this condition--it's long overdue for recognition and work on a resolution.

    Gentle hugs, and all best wishes for real healing in this New Year!
    Binney

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2018

    Ched, just checking with Google Scholar and found this 2002 study from Wakefield Clinic in Adelaide, with an address to contact the lead researcher, Dr. S.C. Huilgol. Don't know if s/he's still around, but s/he obviously has an interest in what you're dealing with and may be able to update you on current treatment options. The study involved CO2 laser therapy. I have always found researchers to be remarkably approachable:

    http://onlinelibrary.wiley.com/doi/10.1046/j.1524-...

    Looking forward with you to only smooth sailing from here on!
    Binney

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  • aussieched
    aussieched Member Posts: 244
    edited January 2018

    Thanks Binney for your latest post and the attachment which I will check out.

    Actually about 4 years ago when I was first diagnosed with lymphamgioma circumscriptum, it was by fluke really. I was at Macquarie University Hospital for a check up with my oncologist and he asked if I would mind if another Dr sat in on the consult. The Dr was a plastic surgeon from Scotland who was visiting Australia and Macquarie University Hospital to teach the latest techniques of treating lymphadema, as they were in the process of setting up a clinic to specialise in lymphadema treatment and started their first procedures whereby they perform a type of procedure like liposuction, on the affected limbs to remove the excess fluid and help return the limb to a more normal size.

    The Dr took one look at all the tumour like growths in my axilla and diagnosed lymphamgioma circumscriptum and did recommend CO2 laser as a treatment. Unfortunately after doing a search of Sydney, my doctor was not able to source a CO2 laser for my procedure. I did find some in Sydney however they were with beauticians and obviously the operators would not have been trained in the procedure I would have needed. Therefore the problem continued to progress and grow until I had total removal of the skin of the affected area a few months ago.

    I do have a few residual growths still there, so I will investigate your attachment and see what I can come up with again, as I need to get proactive again about fighting this disease. Thanks Binney for your continued support, as I have felt totally alone in this process with no one able to help me, and no one knows much about it due to it being so rare.

    Ched

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2018

    Ched, what a fortuitous visit from the Scottish surgeon--that's just crazy! Not every woman facing this condition can count on such an event, for sure, so increasing awareness of it is crucial, as you have indicated. May I suggest you contact Joachim Zuther, who is the head of one of the established lymphedema training schools, at his blog? It's here:

    http://www.lymphedemablog.com

    He is always open to suggestions for topics to cover regarding lymphedema and its related conditions. Hopefully he could help with getting the word out to others who may be affected, and also to the therapists working in the field who might see it and not recognize it.

    Every woman facing this alone deserves a smart surgeon from Scotland at her side--short of that we'll just have to push for awareness ourselves!

    Onward!
    Binney


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  • hugz4u
    hugz4u Member Posts: 2,781
    edited January 2018

    Binney. Is a CO2 lazer a cold lazer? Because I ordered my cold lazer from Aussie and use it on my injuries. Just thinking if it is I have a very good one that a physiotherapist recommendeded to buy when my therapist visited Aussie and maybe it's what Ched could get . It's user friendly. I dont use for le but I heard you could. I know they can use mine for wound healing. I should have tried it on my finger last summer but forgot I had it in my drawer.

    The lazer has done wonders on my sprained ankle. I’m walking slowly up to three miles already after three weeks.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited January 2018

    Binney I just looked up CO2 lazer. It’s not what I have. Rats!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2018

    Hugz, using the cold laser for LE treatment is controversial because the only tests done on it (in Australia, BTW) were done under a strict protocol by trained therapists, so self-use is not recommended. That research did not include long-term safety follow-ups. It made a splash when it first came up as a LE treatment, but has not lived up to hopes (which of course are always sky high!). It is contraindicated for use in any area with active cancer, since it's believed to stimulate cells, so I was never tempted to try it. It was heavily promoted here in the US by an Aussie company that was eventually in trouble for making false statements about its safety clearance by the US government. Don't hear as much about it anymore, but some therapists do use it as part of LE treatment. Goes back a long way.

    That said, it's excellent that you got such great results with your ankle, and glad you remembered it!

    Hugs,
    Binney

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited January 2018

    Binney. Oh wow. Thx for info. Yes I heard your not to use it on cancer areas but I didn’t know about the le contraindications.

    My therapist had the lazer explained to her in deep detail how it had all the right specs compared to other lazers so I’m feeling confident about it especially since the physiotherapist seemed to know a lot about it and my therapist bought one also.

    It has saved me so much money because I get soft tissue injuries easy being accident prone.

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